Forum Discussion
primek
10 years agoMember
Gene Testing
On the 26th I attended genetic counselling after already providing my family tree. They told me due to my age and confirmation of my family genetic mutation in Scotland it is very likely I have inherited a faulty BRAC1 gene. Oh shit....I didn't say. 51 ...breast cancer...grade 3 but stage 1...Her2+ Es + now possibly gene also. I now await confirmation of this.
The hardest part was discussing it with my siblings who are now going for testing. My sister for her own risks. My brother for his daughter and multiple granddaughters. I am so hoping they are negative. (As well as myself ) My niece is super stressed.
I have made the decision I will pursue more surgery if needed. Already a bilateral mastectomy and halfway through reconstruction, chemo over. So dissapointed I might have more to do before health returns. It's sure is a hard fight to reduce our cancer return risks. ..but ovarian cancer has no early detection...so what choice do we have?
The hardest part was discussing it with my siblings who are now going for testing. My sister for her own risks. My brother for his daughter and multiple granddaughters. I am so hoping they are negative. (As well as myself ) My niece is super stressed.
I have made the decision I will pursue more surgery if needed. Already a bilateral mastectomy and halfway through reconstruction, chemo over. So dissapointed I might have more to do before health returns. It's sure is a hard fight to reduce our cancer return risks. ..but ovarian cancer has no early detection...so what choice do we have?
36 Replies
- NadiMemberOh Kath, I hope you find out soon. Sometimes the waiting is just torturous. Once you find out you can breathe a sigh of relief or put action plans in place. My fingers are crossed for you. HUgs
Nadine - primekMemberStill waiting. ...sigh
- melclarityMemberOhhh goodness! Well deep breath, step at a time Kath! one thing at a time to try and keep you as grounded as possible. Let us know how you go. x
- primekMember@melclarity Yes I was resigned to this but suspect they have mine back as they said to my sister hers will be quick as can map over mine. ..so I am guessing mine is pos.
- melclarityMemberKath,
Sending hugs, it does take about 6 weeks for results. I get mine Tuesday. Sending good vibes, and I hope you hear soon so you know what is what!
Melinda xo - socodaMemberHi Kath,
Crossing fingers for you that your results are negative and that they end up ringing you earlier than expected with those results. Xx Cath - primekMemberThey are happy to do phone discussion re results since we are 500km away. We have already discussed plan if positive.
- ccasperMemberHi @primek
It look about 6 weeks for my results to come back and they told me they only do face to face consults to give results regardless of whether it is positive or negative.
I was lucky enough to find that mine was negative. Wishing you all the best. And hoping for negative results for the gene test x - Jo_L_MemberDont forget 131120 has Gene Connect where you can chat to others as well :)
- primekMemberHi All...just touching base...I am still waiting for tesults...I even called them on Tuesday but they said to me ..oh no too soon. I was sure they told me 2 to 4 weeks as they knew where to look. Anyway ...resolved I had at least 3 weeks to hear.
My sister had an appointment with them also this day (which is in Adelaide ...500km away) with the same counselor. She wad told 2 to 4 weeks as they know where to look...hmmm. My sister said the counselor said she would be contacting me this week but have to wait until after the multidisciplinary team meeting.
So my anxiety is again sky high. To me...if it was negative what is there to discuss? I believe that means it is positive. Then I keep saying to myself it isnt for sure . I'm so fed up. I'm scared to know but just need to know. And then the next stage starts...I'm just now also stressed about surgery waiting times. The other thing the counselor said to my sister was she had enquired about teleheath for us so they could support us and they also have found out that a onco gynacologist visits here so we could have surgery here. ..hmmm ...would she do all those enquiries if it was negative?
Then of course Adelaide was without power yesterday. ..dammit...does this mean more delay?
Sorry. ..but trying to pretend I am not freaking out isn't working. I needed to share with people who understand.
Thanks
Kath x